Wednesday, December 27, 2006

I just got back from spending Christmas with my in-laws in Michigan. It was a wonderful trip—we visited with relatives we don’t see much, we ate lots of good food, and we spent time just relaxing and catching up with my husband’s parents and family.

It was the first Christmas I didn’t spend with my side of the family, and the differences were compelling. Of course, there were obvious ones: Christmas Eve was much quieter and peaceful than the boisterous, crowded Italian Christmas Eves of my past. There was no spaghetti, meatballs, or traditional fish dishes, but there were plenty of delicious roasts, potatoes, and desserts like apple crisp. Instead of the frenzied gift exchange, we opened our gifts one by one; instead of Midnight Mass, we went to a 5pm Lutheran service—and I loved every second of it, just like I love the traditions I’ve known since childhood.

Over the course of the four days, I couldn’t help noticing lots of other fundamental differences, namely that for the first time in my life, I saw what a healthy Christmas looked like for a healthy family.

My mother-in-law cooked meal after meal, and was able to chop, mix, scrub, and lift. Between her spine problems, reconstructed shoulders, and bone-crushing degenerative joint disease and advanced rheumatoid arthritis, my mother hasn’t been able to do any of these things in such a long time. My father-in-law spent time clearing brush in the backyard, moving large limbs and getting his hands dirty. When he was done, he went on a walk with us and then helped vacuum the living room. Between his muscle disease and his heart problems, the weakness, pain, and fatigue that physical exertion often causes my father means he can’t do things he’d like to do, like putter in his own backyard, move things for my mother, or run to the grocery store without paying for it later.

I wasn’t used to long car rides or shopping trips that didn’t translate into a day’s recuperation, or how getting the house ready for company didn’t mean being in so much pain afterwards that sitting up seems like a monumental effort. I wasn’t used to not having to build in extra time to recover from tasks, or not worrying that a family party would do more harm than benefit to my parents. There was no nausea from chemotherapy, no heating pads or ice packs to procure, no last minute prescriptions to pick up at Walgreens, no stress or frustration or struggle.

In essence, I wasn’t used to daily tasks and holiday preparations being so effortless, to life being so calm and even keel. And in the middle of all the celebration and tradition, I felt a twinge of sadness for the family I left in Boston. They would trade all the Christmas gifts in the world for one day of living like this, and for everything they do have—joy, love, support, friends, etc—this is the one gift they will never have. They don’t resent or lament that, but once I saw what it could be like, once I saw how the healthy lived, I couldn’t help but wish for it for them.

Thursday, December 21, 2006

I read Alex Beam’s column in the Boston Globe the other day all about radio talk show host Jan Mickelson’s incredulous rant against diabetics. As quoted in the article, Mickelson told Type 1 diabetic and radio guest James Hirsch (whose son is also diabetic), “I know the desire to reproduce from your own gene pool is almost overwhelming…But what if you know have the shallow end of your own pool? …If you are genetically flawed, just don’t reproduce. That’s just being a bad citizen.”

While Mickelson later admitted he confused Type 1 and Type 2 diabetes, his eugenics-based approach to solving health care problems remained both steadfast and confounding.

Obviously there are so many angles and ways to respond to Hirsch’s vitriolic and illogical argument. It is a topic we discuss often in my writing courses that explore constructions of health in contemporary literature. The more we find out about diseases and their genetic components, the more people like Mickelson can use burgeoning science as an ill-formed argument against reproduction. In response to diabetics being labeled as “genetically flawed”, Hirsch countered with the examples of breast cancer patients and those stricken with Alzheimer’s—after all, no one would apply such labels to these patients despite the genetic basis of those debilitating conditions.

If that’s the case, then what about heart disease? Certainly genetics plays a role in cholesterol levels. Or celiac disease, an autoimmune disorder with a strong genetic component? Or extend that line of thought further—what about poor vision, ADHD and other learning disabilities? All these things have genetic links. Where, then, should we demarcate the line that separates the “shallow” end of Mickelson’s pool from the more appropriate deep end? Who decides which variations and mutations are permissible, and which ones banish us to the bottom of the reproductive chain?

I can take this topic out of the news and out of my classroom because it is one that has a stake in my own life. Many of my health problems—including the potentially life-threatening ones—are genetic ones. Though both sides of my family have complicated medical histories, no one on either side has anything close to primary cilia dyskinesia—and yet here I am. Perhaps I am genetically flawed in the eyes of people like Mickelson, but I don’t see it that way.

Telling people with certain diseases not to reproduce misses the mark on so many levels. Labels and categories can never fully encompass all the things that underlie questions of health and wellness, and viewing the genetic code as textual errors to be re-written is shocking in its exclusion.

We’re thinking about having children, and while I have a lot of concerns, I am not worried about passing on my PCD to my children. They may get their grandfather’s high cholesterol or diabetes, their father’s dyslexia, their mother’s celiac disease, or, also like their mother, they may be born with something no one in the family has seen or had before. If they’re lucky, they’ll also inherit their grandfather’s drive and determination, their mother’s memory and resiliency, their father’s compassion, wisdom, and intellect. Whatever combination of genes—of variations, mutations, quirks, and talents—they have we’ll take, with gratitude.

Luckily for all of our sakes, ignorance isn’t something that is inherited. Unfortunately it exists, but only in those people at the “shallow” end.

Tuesday, December 19, 2006

I found out last night that the father of a friend of mine died suddenly the other night. Obviously all death is tragic, but there is something especially unsettling about unexpected death—the lack of warning, of preparation, the inability to say all the things we’d say if we had the chance.

Naturally, this terribly sad news made me think of my own father, currently in the midst of a flare-up of his polymyositis and still trying to improve his renal function. He has flirted with death more times than I care to elaborate, and when I consider the many life-threatening conditions he’s battled for so many years, I can’t help but wonder just how much more his body can take.

For people whose lives are dominated by chronic illness, sudden death is so disconcerting because it flies in the face of all the things we do each day for our health. I’ve watched my father test his blood sugar, inject himself with insulin, endure the nausea and ill effects of chemotherapy, and work against the pain and fatigue of muscle disease for years. I’ve picked up his blood pressure, gout, and cholesterol medications from the drug store, and I’ve visited him in the cardiac unit after his catheterizations, angioplasties, and stent insertions. All the things he does to stay alive could wind up becoming his entire life, if he let them.

And all the things he does for his health reassure me that he, that we, have some control over what happens, that if we plan and dose and medicate and recuperate, we can keep death at bay and our bodies can keep bouncing back. Sudden illness and death is so scary for that exact reason, because it defies planning or preparation or proactive approaches. But perhaps the day to day grind of chronic illness, the whispers and tuggings that our conditions bring into our lives, can also combat that most sober of reminders.

No matter how short or trivial the conversation may be, I never hang up with my father (or my mother, husband, or brothers) without saying “I love you". I do this not because I am thinking catastrophically that it could be the last time we speak, but because I have learned not to take anything for granted—illness as well as health.

Monday, December 18, 2006

Temperatures are a little off right now. It certainly looks like Christmastime in Boston—the trees downtown are lit, wreaths adorn street lamps, and the Frog Pond is iced over for skaters. Yet I have only had to wear my winter coat and gloves on one occasion, I haven’t seen my breath in the cold once, and just this weekend I spotted people wearing flip-flops. Despite all the griping I do when I have to shovel my car out of the snow, the unseasonably warm weather is, quite frankly, disconcerting.

Equally disconcerting? My internal temperature gauge, which is mired in its own homeostatic haywire. What was once a once or twice a week phenomenon now occurs almost nightly: despite layers of clothes and the fact that our condo’s pre-set heating system is blasting even though it’s warm outside, I get cold and clammy. Actually, it’s more like I am dripping in sweat. My face turns deathly pale, the palpitations begin, and I can barely string sentences together I am so exhausted. Sometimes I feel it coming on, other times it can happen within a matter of minutes. Either way, when it hits me, I am totally drained for hours, sometimes days.

When my temporary adrenal problems improved after two years, I’d been hoping these weird daily drains would dissipate as well, but no such luck. Certainly, plenty of things could contribute to this upsurge in symptoms—multiple current infections, chronic fatigue, the end-of-the semester crunch and general holiday craziness. But when I discussed all this with my doctor last week, it turned out my favorite ghost still haunted me: steroids.

Now, I’ve railed about steroids, deplored them, and alternately owed my life to them in previous posts, so I’ll save that for another time. Since I’ve cut way, way down on my steroid use in the past two years (oh, the wonders of having correct diagnoses at last!), I guess I was hoping the havoc they wreaked on my body would magically disappear. But I’d blissfully forgotten a key lesson I learned years ago—the effects of steroids linger in the body for long after we’ve stopped taking them. It may be a few months since I’ve had oral or injected steroids, but that doesn’t mean my body isn’t feeling them.

“Think of it as your body fighting to regain control over the functions steroids have controlled for so long. When your body wins, you feel okay. When it loses control, things get out whack,” my doctor told me.

I was on steroids continuously for more than twenty years and am off and on them these days, so how much longer will they sideline me? I can’t be sure—no one really can be—but one thing really reassures me: unlike most of things wrong with me, this might actually go away some day. Assuming, of course, that I can avoid having to take steroids in the first place. I’ve been through this cycle many times, but at least I am getting closer to achieving that goal than ever before.

Till then, while Boston flirts with a decidedly un-white Christmas, I’ll keep piling on the layers and hope for the best.

Wednesday, December 06, 2006

Who Moved My Fallopian Tube?

It was supposed to be the no-brainer procedure of the batch of standard infertility evaluation tests, the one diagnostic test that was more formality than functional. Hysterosalpingograms test whether fallopian tubes are open or blocked, and for women trying to get pregnant and not succeeding, the immediate results of this test can make a huge difference.

In my case, no one suspected I had any problems with my tubes, but my medical team decided it was worth it to know for sure and rule it out since a lot of the time, women have blocked tubes and don’t even know it. I had enough problems we already knew about that the last thing we needed was a separate condition going undetected.

I am careful not to turn this site into an infertility blog—my goal is to explore issues surrounding living with chronic illnesses in general, rather than focus on a specific condition or topic. The thing is, though, these two topics seem to overlap more and more these days.

Tubes aside, my reproductive challenges are two-fold: there is the question of can I get pregnant and the inevitable question of should I get pregnant. The “can” part is somewhat dubious—if I don’t have cilia in my reproductive system (and there is no way to test this) then things can’t move along my fallopian tubes to get where they need to be. Other than simply trying and never getting pregnant, a high-risk specialist told me one of the only other indications of whether or not I had cilia would be an ectopic pregnancy.

Equally complicated is the “should” question—some of the numerous concerns there include increased infections and hospitalizations and further decreases in oxygenation, all of which mean a significantly increased risk of seriously pre-term delivery (and that’s just the beginning).

In the middle of these two questions are assisted reproductive techniques like IVF, and here again the can versus should debate is ever-present: were I to elect this path, I could only have single-embryo implantation because the high risks I already face mean multiple births are simply not an option, and the same high-risk factors need to be weighed.

So as we’re processing all of this information and trying to make what seem like impossible decisions, this one test was supposed to be the easy part.

“So you don’t have a left tube, correct?” the doctor asked me during the test.

“Um, as far as I know I do. I’ve never heard that I don’t,” I said.

“Well, the right one looks good but the left one isn’t here,” she said. A pause.

“Don’t get too worried, most of the time this just means the muscle is spasming and the dye can’t get through,” she continued. “At this point, I don’t think more invasive tests are necessary, but we’ll revisit that issue if we need to.”

I nodded, slightly stunned. It wasn’t so much that I didn’t believe her—and intellectually, I knew she was the expert and had seen enough of these to know—as it was that I just hadn’t planned on hearing anything other than “Just like we expected, everything’s fine.”

But after all these years, why is it that I am still surprised when my body doesn’t act the way I expect it to? It never has.

And the more I thought about that, the less inclined to worry about my currently Missing in Action fallopian tube. Things looked grim and wrought with complications, but I’d faced grim and complicated situations many times and somehow, my body always managed to do what none of us expected it to: survive.

The one thing I can say with utmost confidence about my body is that it is unpredictable and anything can happen--which is exactly why I'm not giving up on it just yet.